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Chair: Virginia Lorenzi

Scribe: Dave deBronkart

NOTE: This attendance applies if you are present at the related meeting/call, regardless if you have signed a different attendance for your WG. 





Virginia Lorenziy
Debi Willisy
LLoyd McKenziey
Rachel Richessony

Mikael Rinnetmäki

Nancy Lush
Lisa Nelson
Dave deBronkarty
Jan Oldenburgy
Marie Moen
Abigail Watsonlate
John Moehrkelate
John Keyesy
Bart Carlson (@AzubaHealth)
Terrie Reed
Liz Murrans

Lindsey Hoggle

Juana Romero

Lisa Winstel

Jose Costa Texeira

Meeting Info:

HL7 Patient Empowerment 
United States: +1 (872) 240-3212,,,322-275-573 

Minutes for April 9 2020

Summary of action items

  • Virginia Lorenzi Re conflicting freeconferencecall info in meeting invites,  send email to webmaster@hl7
  • All, see Next Steps at bottom of this agenda re what to do about each of the four priorities we chose

Agenda Outline

Agenda Item

Meeting Minutes from Discussion

Decision Link


Welcome newcomers /
COVID-19 "open mic"

  • New! Terrie Reed - former FDA sr adviser on unique device IDs. Has been involved with HL7 for decades
  • COVID-19: Member anecdotes give us a sense that this may be what leads to wider use of portals and telehealth
  • Data seem to strongly suggest SDOH are a huge predictor of which neighborhoods & demographics are hardest-hit (sad)

The 2020-05 FHIR connectathon will be virtual, May 13-15

I spoke to the admin after our call. The registration page will be live this week. Price will be $100. 

ManagementApproval of this Agendadone
ManagementPrior call Minutes approval


MethodologyMigration to Zoom
  • Debi Willis to follow up what HL7 thinks about privacy 

HL7 sent email to co-chairs about Zoom privacy issues; they decided it's still the best choice. (Mikael is satisifed with the email that was sent to co-chairs about security issues.)

Note: HL7 is handing out Zoom accounts to WGs in some order, with priority for groups that have multiple meetings a week. We won't be first. We are happy to stay with GoToMeeting for now.

Item is completed - remove from agenda


Review & approve Priorities Grid ; choose top 3 projects.

This final draft of the priorities grid reflects our results today.
We'll archive it and trim it down to a final working version.

-  -  -  -  -  -  -  -  -  -

4 items have five "top 3" votes from members. We had said we'd choose 3 but we agreed all 4 are worthy. Lloyd McKenzie says two have existing projects we can engage with; the other two will be "net new" for HL7:

  • These two have existing projects in HL7:
    • Care Planning (Patient Care WG)
    • Consents (CBCP WG)
  • New topics - no ongoing projects:
    • Patient Contributed Data - see discussion below
    • Corrections to Errors in the Record

Re Consents and Care Planning:

  • John Moehrkeis co-author on consents in CBCP. He offered to brief us about it on one of our calls.
  • Perhaps one of the Care Plan people (Lisa?) can do the same?

Re Patient Contributed Data (was "Patient Observations") -

There are existing projects in HL7 but they're relatively narrowly scoped; there's justification for a broader project, providing consistency & filling gaps, and create smaller focused IGs.

We discussed at length the differences between PROs (pt-reported outcomes), PGHD (patient-generated health data - a term fraught with meaning in the outside world) and Patient Observations: "Observations" are a formal resource in FHIR, but colloquially pt observations are more like "Pt says they (had surgery)(fell)(discontinued a med)(...)" 

All agreed that the umbrella term "Patient Contributed Data" includes everything we mean. The idea is that until this age of social change, all data in the system was created or contributed by clinicians; the new era, for which this WG exists, is one where patients are empowered (and even WANTED) to contribute information.

For the PSS: 

  • Note that PGHD is a subset (one type of patient contribution)
  • Note that "Patient" as used here includes caregivers
  • Mention some specific FHIR resources
ManagementNext Steps for WG

Time to plan action, pick project leaders, get to work!

  • For Care Planning (Patient Care) and Consents (CBCP): identify their existing projects for our chosen priorities
  • For the new topics, start creating HL7 Project Scope Statements  See  How to Create a PSS from Template, which leads to this starter page.

What's next in the HL7 method? Do we pick project leads?



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